My dreams for the baby growing in my belly were the same as any other woman who has had the opportunity to create life. I wanted happiness, success (in whatever form), friends, health, love. Having an autistic child in our family did add a touch of worry. I saw from a state away the toll it took on my cousin and her family and I wanted no part of it. Fast forward a bit to a colicky baby who ends up in the ER on a ventilator before he’s four months old and then to an 18 month old who would bang his head on our tile floor repeatedly and so hard that I would call the doctor in fear. Diagnosed with PDD-NOS (no longer an official DSM diagnosis but just means he tested on the mild side of the autism spectrum) at 2 years old, I was thrown from an already stressful place to one with more unknowns and burden than I’d ever known. I cried every day, I read books and blogs, and saw doctors with a boy who could not sit still for even 10 seconds. I was lost.
Jason and I had Gage late. I turned 39 a week before he joined us and none of our friends had kids. Okay, not true, we had two friends with kids and one had just moved back to France and the other we didn’t see more than every few months. I had friends stop by in the first year, and Gage’s constant need for attention (not unlike many one year olds) limited my real-time with them. As I took Gage out to more public places we made some mom and baby friends and that was nice. But Gage did need constant supervision and redirection. I liken this more to an ADHD thing than to autism (not formally diagnosed, but that’s just a formality).
Fast forward two years and here I am still blogging even though I do not have time for it. My day consists of getting him to school and two therapies, even on weekends. I also need to find the right therapies (if any), therapists and schools and a way I can schedule them all. After two years of the traditional therapies (ABA, OT, Speech, Social Groups, Swimming) I have dipped into the biomedical field more which means more extensive research than I ever thought this girl who hates science would ever see again. Here I am at 1 am just finishing a 4o minute online conversation about the new supplement his DAN Doctor wants him to try. I turned to a group of fantastic women who have tried everything and are willing to share their successes and failures. Over 9,000 women in a closed group fighting for their kids. I am still learning and reading and stressing and worrying. For the first time we’ve found a probiotic that Gage can tolerate and the past few weeks he has been a happier, chattier guy. That’s what makes it worth it.
I’ve had to go doctor searching in a way that parents with typical kids never will. I have had to withstand questions on parenting choices and try not to alienate anyone who can help Gage. I’ve been/am consumed. It’s no surprise that a study showed that 80% of couples with special needs kids divorce. To be honest, I consider date nights, even if it is just dinner and/or a movie, as therapy for Gage even though he’s home with the grandparents. He needs Jason and I to be united and loving and that is just as important to his well-being as playing with his friends in social group. But I am also the one who has to schedule and plan for these date nights/therapies. I pay the bills (mostly on time), I clean (as little as possible, but still), I cook and do the grocery shopping for a dairy-free, gluten-free, mostly soy and GMO free kid. I basically keep this place running when Jason is at work earning the money for all of these doctors and therapies. And all of this is on top of dealing with whatever crazy thing autism brings into our life that day, sometimes smiles, occasionally aggressive tantrums.
I’m not friendless, but I have little time for the friends I have. And the ones that I had before, while still loved and appreciated, are so far removed from what’s going on. My real life tribe consists of the moms I meet who are doing the same things with their kids as I am. We get each other. We get the daily struggles and stress, but we also understand that our time is not our own so often we sit with each other during therapy and send the occasional text or email until we see each other the next week. I love these moms but they are just as depleted as I am.
All of this to illustrate why the book blogging community can still bring me to tears. I know my mind, that now runs in 100 different directions at once, isn’t fully available to blog. I keep doing it because it’s something I can do on my own time (ie the middle of the night) and I genuinely love the women that I have met over the past seven years. The quality isn’t the same but the affection and friendship I feel for all of you who take the time to comment or email is so much more. Last week, in the span of two days, I received THREE packages for Gage. A Lola book from Kathy, two Texas books from Kay, and four atlas books and a gazillion stickers from Jill. The support from you warms this mama’s heart and brings a happy tear to her eye. Thank you for letting me share Gage with you and make up silly quizzes and write a little about the books that I still manage to read. You are all a part of my tribe too and I appreciate each and every one of you who takes the time to stop by and say hi. Thanks for bringing bookish friendship into my busy world 🙂